Wednesday, November 16, 2011

The Mythology of Bullying

(Article for Adam Feinstein’s  Awares International Online Autism Conference)

I have always been a huge fan of mythology!  I believed in fantastical beings like Santa Claus long after my neurotypical peers naturally moved on to priorities like “girls, sports, and MTV.”  Growing up was a sloth-like process and I continued the nonsensical dance far longer than was appropriate.  But it feels good to celebrate nonsense and we are all guilty of this guilty pleasure to some extent.  How many of us passionately hold onto the urban legend that a Munchkin hanged himself during the Great Depression-era filming of “The Wizard of Oz?” because there is a faint image of something swinging behind the scenery.  But there is a form of mythology that is absolutely deadly and hopefully we will let go of its remnants soon enough.  This is the mythology of…bullying.

These myths were strengthened because I was part of the last generation when Asperger’s syndrome was unrecognized by mainstream society as a legitimate disability and was treated as a genuine character flaw.  Being extremely weird and occasionally acting like a jerk was not seen as a condition deserving of mercy. The brutality of being tormented and/or taken advantage of was viewed as a self-inflicted consequence created by the victim himself.  My mother eventually had to take me out of a fifth grade class because I had a teacher who told her, “It has been my experience that if a child is being bullied in my class, it is usually something he is doing to create it himself.”  This anecdote pales in comparison to others.  Alex Plank, the founder of a popular web page called: had his grade school principal take him into a room during recess where he was staring into the faces of classmates.  Each classmate had to say at least one thing that annoyed them about Alex.  These well-meaning, medieval tactics did nothing beyond creating a cache of haunting memories and scars.  Furthermore, bullying was viewed as character-building when common sense should tell us that nothing about constant abuse builds anything beyond a lasting trauma.  And there was nothing character-building about what happened to me at age seventeen.

As a senior in high school, I was a victim of what we now call cyber bullying.  It was flattering when a female classmate contacted me even though I had never met her before.  We continued communicating throughout the summer and I even met her at a local diner.  I persisted even after she severed contact with me for absolutely no reason.  My energy toward “Liz West” peaked when she claimed a man had raped her over the summer and resulted in an aborted pregnancy.  It took six months to finally learn that “Liz West” was a figment of someone’s imagination.  A group of students had created an online hoax and even went to the extremes of finding a young woman from a neighboring school district to meet me at the diner.  There was a human face to associate with the online persona and I had absolutely no idea that I was being bullied for those six months.  I thought they were my good friends.  Scars do not heal and this incident happened to me twelve years ago.  We are only now starting to grasp the magnitude of this deadly crisis.
The great American poet, Maya Angelou once said, “When you know better…you do better.” This should hopefully tell us something….

Tuesday, November 1, 2011

The Halloween that Almost Wasn’t…but Just Barely Was!

It was a Halloween none of the little kiddies will ever forget and has earned its place in a lifetime of permanent memories unless the ravages of Alzheimer’s Disease someday take it’s toll.  A snow day on what should have always been deemed as a national holiday?  A nostalgic, winter wonderland landscape?  Even with the childlike qualities of my Asperger’s syndrome, the magic was a little less potent for me as an adult.  But Halloween is still MY Christmas.  My self-proclaimed, Asperger’s Independence Day.  It is the only day someone like me may go out in public looking extremely weird, but pale in comparison to the rest of the world.  For just one magical day.

I refer to this freakish, autumn snowstorm as “Snow Leaf:  The Sequel.”  Of course, I am referring to the last time something of this magnitude happened when I was only five years old.  My memories of that event exist in the form of a few lit candles to counter the power loss and the rest is obscured by a childlike haze.  This event occurred later in the season and is much more memorable.

I looked out my front door on the morning of Sunday, October 30th and stared directly into the landscape of Tim Burton’s  “The Nightmare Before Christmas.”  The dark side of this blizzard could create an even darker reality for us all!  If there is a chance of such a wintry scene before Halloween…perhaps the retailers will feel more justified in breaking out the Holiday merchandise by the beginning of September.  God help us all or unite with me to create a petition making it illegal to advertise the Holiday paraphrenalia before November 1st!

The freak storm came at a very inconvenient time in my life!  (As if there is such a thing as a convenient time for a blizzard unless you are a gimlet-eyed schoolboy gazing at the saturated night sky on Sunday night with an uncompleted book report languishing on his desk.)  I was supposed to attend a Benefit for the Maplebrook School in Amenia, NY where they were featuring my book as one of the Silent Auction prizes.  For some reason, they had the Benefit anyway as at least one foot of snow fell on humanity.  It also threatened to interfere with the mother of all Holidays.

The older I become and the more I advance in my career…the more I am forced to let go.  I do not believe in letting go, but acknowledge sometimes there is absolutely no choice.  The other choice is a path toward doom.  I acknowledged that in order to complete my book in 2010, I would have to give up my marathon cards that start in early December.  The two weeks devoted to this obsession were put to much better use on two book chapters.  Life and consequences do not always work with my most potent obsessions.
The one obsession I cannot and will never let go of, however, is Halloween.  No matter how relentless it becomes to keep up with life, I shall constantly make time for carving Jack O’Lanterns and even visiting a few “understanding” houses for Trick-or-Treating.  This year was an extremely close call, however.  The time spent shoveling snow and powering up generators created a profound exhaustion.  I also had business with Anderson Center for Autism that could not have waited until after Halloween.  But in the end, I held on just as I hope to do for the rest of my life.

My mother berated me for wanting to carve four Jack O’Lanterns and this was the first time in my life I agreed it would be too much to stay up all night to accomplish this task.  In the end, I compromised on carving just two, but only had time for ONE.  But it was one amazing scene of a witch meant to look like Marilyn Monroe in that “Seven Year Itch” scene on the subway.  It was a Jack O’Lantern that was praised by the neighborhood and Halloween has been saved.  We should avoid letting go when possible, but I will always teach my peers to find the compromise….

Just when I thought the night could not have been any better with more last-minute closure, I managed to squeeze in my only major scare that day in a world where kids are desensitized to the most grotesque Halloween costumes.  I walked in the dark to the house of a high school acquaintance/friend in a remote area where they had never entertained any Trick O’Treater….EVER.  Panic set in amongst the family when I knocked on the door to say hello.  “This has never happened before and we have no candy!!  What are we going to do…?!”

Wednesday, September 14, 2011

Free-Falling to End Bullying and Create Compassion

On Tuesday, August 9, 2011 I had the honor of crossing something off my “Bucket List” a lot earlier than expected.  It was my decision to deliberately jump out of a “mechanically-sound” plane at the rate of 100 miles an hour at a height of 13,000 feet.  Thanks to the expertise of the staff at Skydive the Ranch in Gardiner, NY…I gently glided into the arms of the community waiting for me down below.

It is easy to brag about one’s intentions to go skydiving.  All it takes is a phone call to a skydiving facility and constant Facebook postings reminding people of the looming day.  But the trick is to not flake out or make it almost impossible to cancel one’s jump without facing consequences.  I chose to publicize my jump to the community as well as the media and accept a $2,500 grant from Anderson Center for Autism to sponsor my event.  But there was something else driving me to keep the date aside from fear of being digitally “tarred and feathered” as a coward on Facebook.

Like so many schoolchildren of various abilities, I experienced too many nights of staring at the bedroom ceiling wondering if the day coming up would be worse than the day that just past.  Most of the eccentricities “provoking” the abuse revolved around a case of Asperger’s syndrome, which is the mildest and most misunderstood form of Asperger’s syndrome.  During my many speeches to middle school students, I remind my audience that I have not changed too much.  I am still as “weird” as the day is long.  Also, most of my life has revolved around failures.  My life has dramatically changed and people are much more likely to request an autograph these days than accuse me of being a psychopath.  But it took nearly three decades as well as a published book with Penguin Group (USA) to see things dramatically change.  I will work tirelessly to ensure that someone will not have to go through these extremes in order to experience better days.

My jump was widely publicized as an anti-bullying event revolving around my campaign, “Someday Has to Be Today.”  I wanted to do something that rages against the well-meaning, public service announcement encouraging young people to just hang in there and that things will get better.  Our intentions should be to create mercy in the present because only two more years of abuse seems like a lifetime for the average child.

You are probably asking yourself the question that everybody wants to know.  What does skydiving have to do with bullying?  The answer is simple:  Absolutely nothing.  And this, my friends, is the whole point!  The chances of getting killed in a skydiving accident are 1 out of 150,000 and only 24 people have been killed this year worldwide.  The statistics revolving around bullying are grimmer with many more than 24 individuals giving up hope in the worst way possible.  With these realities in mind…it was relatively easy to jump off the face of the earth as opposed to going back to those precarious middle school years.

As human beings, our natural instincts of self-preservation prevent us from stepping out of a plane with nothing between us and the ground over thirteen thousand feet below –  except a parachute that will hopefully deploy as soon as you pull the ripcord.  Various scenarios enter one’s mind that probably won’t happen, but could.  The tandem instructor could accidentally hit the back of his head on the edge of the plane and fall to the ground unconscious with me chained to his back.  I frantically fumble to find the ripcord, as the ground that once seemed so far away is growing more visible by the second.  There is also the fear of hitting a bird with such deadly force that its beak burrows into my brain.  But I just repeat the rare statistics and know there is absolutely no turning back.  The large door to the plane opens and the panic begins.  A flying plane is not supposed to have any open orifices!!  The man in front of you yells out a sickly-dry, “See ya!” and jumps out of the plane.  Skydiving takes what is natural and turns it upside down, which is the ultimate catalyst for fear.

It is difficult to describe the sensation of skydiving mainly because it is indescribable.  But it is the closest one will ever come to shaking hands with the heavens.  It feels like you are flying as opposed to plummeting at over 100 miles per hour with enough composure to make amusing (but appropriate) hand gestures in front of the camera.  I also mouthed, “I love this!” to the camera man who was also falling with me and the tandem instructor.  The chute opened as I shot upwards like a torpedo from the shock of deployment.  Seconds later, I was floating toward the ground for a soft landing while helping the instructor steer the parachute.  Or maybe he was steering it.  I don’t remember all the details except a feeling of comfort and knowing everything would be all right.

I appreciated all the families and bullying victims who came out to give a voice to their anguish.  It took an exorbitant amount of courage to tell your personal stories for the sake   Keep checking YouTube for my skydiving video in October by typing “Jesse Saperstein” on the search engine.  Always remember there is an enormous difference between having to fight a little harder for a chance compared to not having much of a fighting chance.  My jump and prior accomplishments occurred not from heroism, but when others took the time to understand there is more to me than meets the eye.  Always remember that when you take another look at misunderstood individuals…you may give them the power to fly.  Furthermore, I am not suggesting you also jump out of a plane unless you have your mother’s permission, which you probably won’t.  But try to find your own unique way to become heroic and give others the chance to do the same.

Thursday, September 1, 2011

The Power of Two Voices United in the Battle for Understanding.

ATYPICAL: My chance meeting with a remarkable young man with Asperger’s

This past summer, I accompanied my husband Read to his college reunion at the beautiful campus of Hobart and Williams Smith Colleges. While visiting the campus bookstore, I found a book written a autographed by a remarkable young man, Hobart graduate Jesse Saperstein, class of  2004. After reading the book in two sittings, I reached out to Jesse, who lives in Pleasant Valley, N.Y., via email and heard back from him right away. In addition to graduating cum laude from college, and writing a published book, this young man hiked the entire Appalachian Trail and raised 20,000 dollars for pediatric AIDS and Camp TLC where he has worked as a volunteer counselor. He told me of his next project, an anti-bullying campaign featuring a video in which he skydives as as demonstration of what is possible when individuals of various abilities are allowed to shine when society chooses to give them a chance.

I have asked Jesse to write a few paragraphs as our Let’s ACT Today! guest contributor.  And here it is below….

A Plea for Mercy, Understanding, and Acceptance from those Living with High-Functioning Autism

It is not everyday that I receive an e-mail from a beautiful and accomplished producer from Los Angeles who wishes to give me an opportunity to make a greater difference.  When we first began communicating via e-mail, Nancy told me there are no accidents in life and fate allowed our dissimilar universes to overlap.  I tend to agree and there is one similarity that binds us.  We are both affected by the autism spectrum.  I live with Asperger’s syndrome and Nancy experiences it through her amazing son, Wyatt.  Nancy; her husband Read, and their amazing child will ultimately become the veritable tripod propelling themselves through a nonsensical universe of obstacles. Their journey will be a roller coaster of euphoria; pain; hope; alleged false hope; and occasionally anger.  But that is all right because no parent or individual with autism should be forced to accept the unacceptable.  Embrace the fight with the Alspaugh-Jackson family and ask the rest of society to examine my plea for mercy.  I will attempt to inhabit the voices of so many of my peers who are not blessed with such a large venue to be heard.
Having Asperger’s syndrome is not an excuse to engage in behavior that is genuinely inappropriate and fighting for equality also means having to accept consequences for genuine wrongs.  We need you to tell us what we are doing wrong and give us the tools to correct it.  But punishment is grossly ineffective without the opportunity for redemption.  As a child, it was more common for me to be condemned for the bizarre or inappropriate behavior from four years ago as opposed to the leaps and bounds forged over the past few months.  More important than correcting inappropriate behavior is teaching my peers how to look into the mirror once in a while to give to themselves what will not always come from someone else.

Judging someone with Asperger’s syndrome on a first impression will always be a path toward doom.  Mercy shall never flourish unless we “impress” upon society there is more to those on the autism spectrum than meets the eye.  Those deficiencies that need to be corrected may germinate into successes when society chooses to take another look.  Weakness could turn into a strength under the right circumstances if an individual wants it badly enough.  I learned that I could not accept my tendency to blurt out inappropriate comments or grossly overstep boundaries.  It was impossible to “let go” of the brutal realities that were created and the threat of legal consequences for my future.  Therefore, I decided to work in a funeral home for a while where only four phrases would not offend people.  “Hello, goodbye, I am sorry for your loss, the bathroom is around the corner to the left.”  I trained myself to walk on eggshells laced with poison and became a valuable employee because I wanted it badly enough.  Never underestimate the power of “want” or the opportunity for someone with autism to justify a “chance.”

Many of us are incapable of letting go, which is one of the prominent characteristics of Asperger’s syndrome. I actually do not believe in ever letting go in the way you believe I should.  “Letting go” is found in those endeavors where you are unrestrained by the anguish forged by a lifetime of intolerance.  On August 9, 2011 I was able to let go while falling off the face of the earth at over one hundred miles per hour.  Literally.  I went skydiving in front of my entire community to try and end bullying.  My associates and I are in the process of turning the footage into a YouTube video that will be promoted to the nation by the end of September.  I will elaborate on this endeavor in a future blog entry.  In the meantime, we have a lot to look forward to in the near future.

People often marvel at the successes I have achieved since graduating college that would be considered outstanding even for someone without a social disability.  This happened not because of maturity, but due to one simple reality.  Society eventually showed me I had something to fight for and would reciprocate just a little bit when I made the effort.  But as I stated in my skydiving video…nobody should have to publish a book or jump out of a perfectly safe airplane to enjoy a fraction of the respect that is finally coming from mainstream society.  Fight with me to ensure this will not be the case for current and future generations of individuals who live with autism.  Let’s make the 2011-2012 school year one filled with mercy.  Wyatt and our peers may have to fight a little harder for a chance…but they will have more than a “fighting chance” to radiate their brilliance.

Tuesday, July 19, 2011

Mentoring Justin…

I have recently started mentoring a sixteen-year-old boy with Asperger’s syndrome and am finally going to invest the time to mail in the rest of my paperwork.  Locked and loaded.  Just “get g**ng already!”  I despise that phrase with a passion because it brings back traumatic memories from those days of yore.  Therefore, I shall use asterisks as though it were a genuine profanity.  Perhaps the reason for my delay is more than the lack of time to complete these mundane tasks.  I could be afraid to take this step out of fear of failure.

“Justin” and I became acquainted during the interview process and I found him to be a remarkable young man.  The staff told me all sorts of wonderful qualities that endeared him to staff members and even some of his peers.  They also warned me.  “Justin” would try to manipulate me into buying him gifts at the mall and taking him to all sorts of exotic places.  He does not always understand why certain actions will endanger friendships and a sense of trust.  And once trust is broken, it may take an exorbitant amount of time to rebuild.  “Justin” is indeed guilty of the manipulation and severe inconsideration that is stereotypical of the Asperger’s population.  The behavior that tragically justifies societal contempt toward my peers.  The nonsense that I have certainly been guilty of in the past and has nearly ruined my life.  But I eventually had motivation to change when there was finally something to fight for and then some.

Human beings are not able to function without the essence of motivation.  It is not a theory, but a concrete law of nature.  For nearly three months I have been depriving myself of all the caloric foods that would produce a temporary state of euphoria, but did so knowing it would help me lose the abominable amount of weight I have gained from a sedentary year of answering my constant e-mails.  I had a physiological entitlement toward success.  While I am not a smoker, I know people quit smoking with the motivation it will dramatically decrease their chances of dying from lung cancer/a heart attack/a stroke.  Without a modicum of motivation…there is a dark, empty space without even flecks of dust floating around for ambience.

I asked a lot of questions prior to the moment when “Justin” came inside the room.  One of the first questions was, “Let’s say he, you know…works on his inappropriate behavior.  If he shows dramatic improvement then will his peers at the Home show mercy?  Will they give him the ‘break’ he deserves?”  Their response was chilling.  “The other kids at the place don’t really give too many ‘breaks’ to anyone.”

As a child, I was told that people would not like me because of my inappropriate, weird behavior.  “What are you doing to bring this on yourself?”  Nobody told me about the absence of mercy when tolerance is warranted.  Nobody taught me how to look into the mirror and show himself the mercy that will not always come from other people.  Justin must give himself a fighting chance to have some peace within his soul.  I will try to help him find that tranquility…

Perhaps we should start off really small and just arrange a trip to Splashdown or Roller Magic.  I am very fortunate that he enjoys some of the same carefree pastimes as me.  And we will have plenty of time to discuss the brutal realities he will have to battle like Harry Potter in the final duel with the sadistic Lord Voldemort.
If you are a friend to someone on the autism spectrum, the best thing you can do for them is show them the mercy that will not always come when it is deserved.  If their behavior is not appropriate, then show them what they must do to earn your profound respect.  Lead them on the path toward a fighting chance or anything at all…

Monday, July 4, 2011

Drastic Measures to Battle the Bulge

My nickname for winter is “The Jewish Mother-in-Law Season.”  It has a chronic tendency to linger long after it has overstayed its welcome and is a real pain in the butt to get rid of.  The full-blown summer is a welcomed change, but comes with its own side effects.  My occasional complaining comes with the understanding the grass was certainly not greener on the other side.

As someone with Asperger’s syndrome, summer gives me the freedom to indulge in some of my obsessions without burdened by the hazards of winter weather.  There is motivation to exercise and become healthier.  Such as on Thursday night when I decided to make a desperate attempt to destroy the caloric catastrophe that has perpetually settled in the round of my stomach.

When I was too young to know any better, I always believed all the overweight people were those who make a lifestyle choice to sit in front of the television on their days off while slam dunking bags of potato chips.  They were the lazy and downtrodden who essentially gave up on pursuing life itself.  I know this is not true based on the amount of weight I have gained despite being a physically active individual who avoids fast food restaurants like a plague.  But as someone pushing thirty years old, I am beginning to see that the body’s metabolism shows little to no mercy.  Everything we put into our bodies carries draconian consequences.

On Thursday night, I made a choice to walk a distance of 29-miles all the way to my family’s clothing store in Millerton, NY from my home in Pleasant Valley, NY  It is hard to believe I once had the physical and mental fortitude to walk from Georgia to Maine on the 2,174 Appalachian Trail based on my struggles to complete this distance on flat roadways.  But the essence of full-blown hiking was still present and accounted for during this journey.

Even during the tepid summer months with no harsh elements, a mile feels like an eternity.  False hope is a constant and lethal force on the journey.  You feel like you have been walking for hours and it has only been forty minutes.  You see milestones that suggest progress and want to believe you have come farther than is realistically possible.  Progress, however, is calculated at the rate of two-and-a-half miles per hour.  It could be more, but it certainly is not less unless one stops multiple times.  No matter how grueling the trek almost always is…it is still incredible how those tiny increments add up to amazing progress.

My journey began at 12:30 a.m. and ended just minutes before noon on Friday.  Nearly twelve hours of nothing, but walking.  The last two hours of my journey was spent banging two sticks together while singing verses of “Puff the Magic Dragon” in a state of quasi-delirium.
I have come to the conclusion that the only people who can afford to look really good all the time are those who can afford personal trainers and a month’s worth of food from Weight Watcher’s.  But even the rich and famous have struggles as evidenced from Jennifer Love Hewitt’s public battles.  But I shall not give up or give in.  Not now…not ever!

As someone living with Asperger’s syndrome, there is not that much I have control over.  I have little to no control over whether an ignorant and/or fearful person decides to give me a fair chance.  I also do not have power over whether a romantic pursuit reciprocates my affections.  But I have just a little more control over my physiology and am entitled to positive results if I make more of an effort.  I will continue to walk like a masochistic maniac and consume as much celery as possible.  Barnum and Bailey Circus recently contacted me asking me to be part of the Freak Show as the world’s fattest man.  After this phone call, I have decided it was time to take drastic actions in order to combat this metabolic demon!!

Thursday, June 9, 2011

A Beautifully-Brief Life

On the afternoon of Saturday, June 4th, I had the chance to know a friend I had never met before.  Unfortunately, we finally became acquainted when it came time to perform a eulogy at his funeral.  I did not have a chance to know him or help when he needed the most support.

It is no secret in his community or on his mother’s blog that James Ryo Kiyan’s death was self-inflicted.  I did not press for specific details, but will only say that he went off into the woods in the Shenandoah Mountains.  If there is anything comforting to say about this situation…Ryo made this decision while surrounded by the beauty of nature.  He felt safe in a world unfettered by the misunderstandings and irrational fear that often comes from living on the autism spectrum.

I remarked in my eulogy that Ryo was a man who did not receive too many breaks during his brief life, but did the absolute best with his challenges.  There were plenty of unfortunate circumstances contributing toward his decision to give up forever and damage the souls of those who care about him.  But there was one in particular that probably did the worst damage.

Navigating the world with Asperger’s syndrome is like walking on eggshells laced with poison.  Those with the “mildest” form of the condition face the most severe challenges because people don’t identify them as having a disability.  Therefore, the uneducated often react with contempt and/or irrational fear.  It also does not help that these incredible individuals lack the awareness of social boundaries in almost every single environment.  It never gets easier.  And it never will get easier…ever.  The only thing that gets easier is the fear of consequences after having faced them again and again.  Or overanalyzing behavior to figure out how to give oneself a fighting chance.  I have learned how to “back off” in reasonable increments of time to walk the fine line of benign persistence and full-blown stalking.  In my opinion, I also have the right to send elaborate birthday cards to obscure acquaintances because I mean well.  But after a few terrible experiences I have started writing at the end of the card, “I have Asperger’s syndrome and sending cards to acquaintances is how I choose to communicate with people.  If this makes you uncomfortable then that is fine.  But I really have to hear it from you.”  I am unable to let go or change my flamboyant eccentricities.  I am able to compromise and occasionally compromise on the original compromise.  Maybe if Ryo had learned some of these strategies then he would have had more of a chance to survive.  We sat in those pews knowing it could have been different.

Ryo developed a strong infatuation with one of his attractive, single coworkers at the Sullivan County Division of Planning & Environmental Management.  They even spent time having lunch at an Inn and relaxed in her apartment.  Even with Asperger’s syndrome, Ryo probably understood this connection would probably not graduate to a romantic one.  But he wanted to hang on for dear life to the morsel of friendship that did exist.  The woman just wanted to keep things professional and the innocuous crush felt perturbing.

The inability to let go can function as both an invaluable asset and ultimate destructor.  In my eulogy, I mentioned, “When something was broken…Ryo wanted to fix it.”  He wanted to fix the misunderstandings and show the woman there was nothing to fear.  The harder he pushed…the more fiercely she pushed away.  Ryo also suffered from cancer, which drained whatever energy he had left.  His essence will live on in our crusade for mercy and common sense.

It pleases me that everyone enjoyed the eulogy and I had a wonderful day with his incredible family.  I hope this is the final eulogy I’ll ever have to give at this type of funeral.  Please check out the blog of Ryo’s mother, Caroline Crane via the link: I won’t let this go and neither should you as we dignify Ryo’s unfortunate choice with action.

Wednesday, June 8, 2011

My Eulogy for James Ryo Kiyan – A Brilliant Man with Asperger’s Syndrome

Thank you ladies and gentlemen for allowing me to speak here today.  I have not delivered too many eulogies in my life and this one is probably going to be the hardest I’ll ever had to perform.  I did not have the privilege of knowing this incredible man who left our hearts and souls prematurely.  Our physical paths crossed too briefly when we both attended a barbeque last summer at the home of a mutual friend named, Kate Palmer.  But from learning about him through the blog entries of his mother, Caroline Crane, and seeing all the people who have come to honor him today…I desperately wish there was an opportunity to turn back the clock and reach out to him.  Especially if I had known the level of anguish he was battling.  I have heard enough wonderful things about him to speak at this service honoring his contributions, stunted potential, and friendships that were cultivated with all of you.   

Despite being blessed with the support of his incredible mother, Caroline Crane, many of you in he congregation, Ryo was someone who did not receive too many “breaks” in his life, but seemed to do the absolute best he could with his social challenges.  As most of you already know, these challenges revolved around an undiagnosed case of Asperger’s syndrome or mild autism.  Yet he persisted with the passion of an underdog in a constant search for mercy in a world that often treated him like a square peg grindings its way into a round hole.  A world that reacted with fear and ignorance when that was easier than giving him the benefit of the doubt.   But for most of his life, Ryo never gave up, which is one of the factors that probably exacerbated his misery.  When something was broken…he wanted to try and fix it.  When a misunderstanding occurred, he attempted to resolve it.  When there were unanswered questions…he fought for closure.  When someone was afraid of his benign eccentricities…he put all his energy into helping them absolve that fear.  His determined soul was not built for a society that often preferred to give up in favor of what is easiest.   

Ryo never stopped looking for a community to would show unconditional acceptance or at least differentiate between Asperger’s syndrome & malicious behavior.  Even if this meant moving across the country in search for a better life in Los Angeles, Ryo took these actions and more. Ryo was a survivor in both the metaphorical and literal sense of the word.  Even during the grueling, six month regimen of chemotherapy to treat his bout with colon cancer, he refused to give up on work and life.  As his mother, Caroline, wrote in a recent blog entry, Rather than be dependant, he asked the oncologist to go easy on whatever sedative they added to lessen the discomfort. He wanted to stay awake both for driving and for work. His fellow staff members knew he was being treated, but only one, who had been through it himself, really understood the physical and emotional toll.

There were several factors contributing to Ryo’s unfortunate choice, although it is not fair to blame specific individuals for his departure.  But what I do know is things could have, would have, and should have been resolved with a semblance of dialogue and additional compassion.  I will not let this go and hopefully you won’t either as we search for answers and most important…prevention of future tragedies.   Ryo is someone who I would have liked to know better and he could have made a profound difference in my life. The irrational fear and constant misunderstandings that plagued his life are something I can relate to because we share the same diagnosis.  I can also empathize with the feelings of profound helplessness and sometimes wanting to give up in the worst way possible.  Ryo is definitely a man I would have wanted in my life who could have offered hope during dark periods.  In return, I would have done my best to return the favor.  Let the Ryo’s of today and tomorrow know there is an entire congregation of individuals who care about them and will help them fight for ourselves.

Sunday, May 29, 2011

Jumping of the Face of the Earth into Mercy

When we are young…the new adventures in life seem much more potent.  Driving has become something of a reflex for me, but I still remember the thrill of driving alone for the first time with a new license.  It was raw and exciting.  I also maintain those memories of traveling Europe on my own during a vacation from a study abroad program in Bath, England.  There is one thrill I have not yet experienced and it is the exhilaration of a lifetime.  Skydiving!!

Another one of my flamboyant ideas has been forming nonstop.  I would desperately like to go skydiving this summer and film an anti-bullying campaign.  The theme will be to plunge off the face of the earth into a cushion of understanding and mercy.  Let’s start off the 2011-2012 school year on a thrilling note.

My family has been pressuring me to suspend the jump until the end of summer when I initially was planning on doing it in a few weeks.  In my opinion, bullying does not take a vacation even when school does.  The torment I sometimes endured over the summer in Day Camp was just an extension of the school year.  But I definitely want the video to make as much of an impact as possible.  My family is not always right and sometimes their guidance is abominable.  They could be right about this one, however.

In accordance with my fantasies…I would like the entire community to wait at the ground when I descend from the heavens.  They will be holding up signs and chanting anti-bullying slogans.  The theme of this video will be the same as the speech filmed at Arlington Middle School last November.  Someday Has to Be Today. Until someone can dangle a crystal ball over someone’s head and predict the definite future, someday is not good enough!  Things did not get much better for me until my book was published in 2010.  Nobody should be forced to go through the extremes I went through in order to earn respect from society.

My previous attempts to promote the anti-bullying campaign have not worked as well as I have hoped.  Maybe things will turn for the better with this new stunt and it is going to circulate like wildfire.  How does a YouTube video even become popular?  I mean…some of them are just so silly like the one with the two girls singing the Justin Bieber as their weird father is dancing in the background.   If the public does not pay attention to a man with autism jumping out of a perfectly functional plane then perhaps nothing will ever work!

Come join me around August 15th, 2011 and launch off the 2011-2012 school year before it begins.  The right way!  It feels good to have such profound support from the community and this is going to be their video, too.  Have a great summer and hope you have goals to keep you occupied.  As for me, I will spend the entire summer working diligently on my second book, which will be titled, Transitioning to Success.  It is going to focus on the often-brutal transition from childhood to full-blown adulthood.  The writing process will grow much easier because I always have so much more energy during the summer months.

I always want to fill up the whole page when writing a new blog entry so I will try to fill in the rest with nonsense.  Sooo….have any of you dared to wade into your frigid pools for the unofficial start of summer.  Rejoice in the summer and know that bullying will not take a vacation even when school does.  I will work hard to make sure your kids have a better chance of earning mercy and acceptance when they say goodbye to their beautiful summer.

Friday, May 27, 2011

Meeting the Great One!

Three days ago, on the evening of Tuesday, May 24th, I had the privilege of meeting Dr. Temple Grandin at the annual Benefit for the Global and Regional Asperger Syndrome Partnership (GRASP), Inc. in New York City.  For those blog viewers who do not know who she is…Dr. Grandin is the most famous individual with autism in the entire world!

It was disappointing to meet Dr. Grandin only because I expected too much.  Dr. Grandin was neither rude or gregarious when she spoke with me and a few others.  My soul split in two when she did not remember reading my book and calling up my editor to rave about my writing.  She did not remember how much her endorsement of, “Brilliant creative writing.  His next book should be a novel” meant to me during the early stages of my writing career.  It is easy to go into the experience and forget that Dr. Grandin is still burdened by the realities of autism.  Social situations will always be cumbersome and perhaps this was a difficult night.  I was able to give her a break and not take it personally, however.  Like the rest of the world, I judged her on accomplishments and intentions as opposed to whether she chose to be the life of the party that particular night.

We walked around the William Bennett Gallery admiring the beautiful artwork and struggling to mingle.  It felt great to meet at least a few people who have found their place in the world as individuals on the autism spectrum.  They were at least employed and not miserable like I have been in the past.  Dr. Grandin’s caliber and the joyous atmosphere did not reflect on the common, sad realities faced by so many of my peers.

It is important to keep in mind that most individuals on the autism spectrum do not have HBO movies and/or books on their resume.  Like Dr. Grandin, people have been judging me on my accomplishments as opposed to the benign weirdness that has provoked society to crucify me in the past.  Most individuals on the autism spectrum fail to receive the “break” they deserve.  It is not fair and is not part of life.  It is a living nightmare.

Hard work and perseverance definitely make a huge difference.  But success will never transpire unless society takes the time to recognize those talents that have allowed Dr. Grandin to have a chance and eventually achieve the celebrity status only reserved for a minute percentage of the population.  I am trying to build on the celebrity status that has been created by Atypical:  Life with Asperger’s in 20 1/3 Chapters.  My next accomplishment will hopefully be to date Jennifer Love Hewitt in the precious span of time she is single.  I will happily be a pioneer to show the world that beautiful women do exist who will take a romantic interest in men who will always be square pegs grinding their way into a round hole.  On that note, Dr. Temple Grandin was presented with the “Distinguished Spectrumite Award.”  Her award was a round peg drilled inside a square hole.  We must sometimes revise the way we look at things and judge how individuals fit into society.  There is nothing more pathetic than talent that is squandered because of a few personality quirks like the ones Dr. Grandin exhibited all night long.

It was easy to take it personally when Dr. Grandin did not seem interested in conversing with me and looked straight ahead.  This was not the public orator I saw at Ulster Community College who was forcing herself to perform in front of many hundreds of people.  But this is autism and it will continue to shine even throughout the most phenomenal successes. She was gracious, however, when I requested a photograph with her and gave me her contact information.  So many public figures would not have done this and those who care about individuals on the autism spectrum will recognize these redeeming qualities.  Anything less will result in doomed first impressions and stillborn chances for these unique individuals…

Monday, April 25, 2011

Gaining toward Doom…

I look down at my protruding stomach and wonder what has become of me?  How did I reach this level of physical decay and when did it begin?  It could have been the months I spent sitting at my computer answering an endless succession of e-mails.  Naturally, I had to sustain my energy via energy beverages and caffeine.  Stimulants only stimulate more lethargy and not metabolism.  Red Bulls are the veritable kiss of death.  I should have just mixed water with copious amounts of sugar and it would have had the same detrimental effect.

When I do lose the weight…I plan to treat every subsequent day like I’m trapped in a mine very slowly filling with toxic gas.  It will kill me, but not for a long time.  There will be no dead canary to give fair warning, too.  I will just look in the mirror and realize it has happened.  The tenacious cycle of trying to take it off again will begin.  Even when I succeed with my goal there will be no end.  We lose weight with the ridiculous illusion that it is gone forever.

I have increased my suffering by constantly raging against reality and preferring to be a square peg that grinds its way into a round hole.  If I do not belong someplace then I want to belong even more.  Perhaps this is why I have always done so well with endeavors like, “The Appalachian Trail.”  As brutal as such tasks may have been, I was always guaranteed success as long as I never gave up.  It is nice to have something profound to fight for and something that will guarantee more self-respect.  Respect for myself and perhaps from the public.

The reason I take on these challenges is partially out of desperation for acceptance in the neurotypical world.  Others need to see the efforts of individuals with Asperger’s syndrome and delegate mercy when mercy is due.  In reality, I am painfully aware that I do not often have control over whether someone shows tolerance and/or gives me a chance.  As long as someone’s actions are not illegal…they have the liberty to treat me with blind contempt.  But I will exercise and make an effort to take care of myself.  This will guarantee success and physiology will show me the compassion that does not always come from other people.

I will try to lose the weight by the start of summer and emerge when the beautiful weather is still in its infancy.  I need to hear those compliments once again.  “You look good…you look good.”   I remember what happened when I did lose about fifteen pounds.  For the first time in about four years I had my first online date who was actually interested in spending time with me after the first outing.  Effort always makes a difference and will buffer some of the realities those with Asperger’s will face in an often-unfair world.

This is why individuals with Asperger syndrome excel in unlikely venues.  They have control over their tenacious persistence and will push their limits.  I hope they will understand that punctuality, integrity, and honesty do make a difference in whether they are given a chance by the public.  It is even more important, however, to show themselves mercy when the rejection is out of their control.  Especially when it is coming from the incurably ignorant.

I now weigh at least two hundred pounds…AGAIN!  My weight hit that milestone a few years ago and my maternal grandmother witnessed this travesty when she saw me in a bathing suit in Delray Beach, Florida.  Her aghast mouth dropped open, but she did say I would lose it with the same determination I used to complete the Appalachian Trail as well as other endeavors.

Let us embrace the harbingers of this beautiful weather and celebrate the reality that this unusually-brutal winter in finally in the past.  Celebrate the pursuit of your own goals and know that the moment you start something is when you start to become successful at it!!

Thursday, March 31, 2011

The Blog to Explain Why I Have Not Been Posting Regular Blogs!!

For years, I dreamed about publishing a book and figured it would be the panacea to end the suffering we non-neurotypicals seem doomed to experience in mainstream society.  I had my first taste of celebrity status after the Appalachian Trail hike when most in the community began to see more than the superficial abnormality.  I wanted more and tried to ignore the occasional hate mail that criticized me for flaunting my heroism.  But heroism and celebrity status were the only ways, it seemed, to alter my sad realities.  I stopped looking for the happy medium a long time ago because it does not seem to exist.  Writing a book appeared to be the only chance to gain that elusive respect and all of my problems would be solved forever.  WRONG!!!

I have achieved my goal to become a published author with Penguin Group (USA) – one of the largest publishing companies on the planet.  In terms of an ego-trip…it doesn’t get much better than that!  With this new accomplishment comes an overwhelming whirlwind of commitments, things to remember, issues to worry about, and, like the rest of the nation, concerns about money.  These days I am self-employed aside from a contractual obligation to lead one orientation session at Anderson Center School for Autism per month.  The large calendar in my office area is littered with upcoming commitments to deliver public orations and show up for appointments.  Even though I have become a lot more responsible with writing commitments down instead of relying on fickle memory, a nightmare still persists.  I am sitting on the couch in my underwear watching an episode of Sponge Bob Squarepants.  All of a sudden the phone rings.  “Hello Jesse!  There are one hundred-and-fifty people waiting to hear you talk in an auditorium.  Where the hell are you?!”  You are fifteen minutes late!”  I screwed up irrevocably, disappointed people who have invested a lot of resources, and lost a substantial part of my fan base.”  Furthermore, I hate letting people down and take promises seriously.  It is one aspect of my Asperger’s syndrome I am able to exert some amount of control over.

Once in a while, I will meet people whose intentions are not benevolent.  Like the aspiring writer with Asperger’s who used me to connect with my literary agency and then complained to my agent that I am too persistent after following up with him only twice in increments of two weeks between e-mails.  Or the acquaintance from high school that wrote me a very convincing e-mail about how she called up the Dr. Phil Show and connected with a producer who was interested in my story.  Instead of admitting she made a mistake, the acquaintance let me continue to waste so much valuable time following up with fictional leads.  But I have been mercifully blessed with amazing people in my personal life and business endeavors.  These individuals make it possible to continue despite the inevitable exhaustion.

I have had plenty of short-lived careers throughout my life.  There has been my fifteen months as a 12-hour night shift worker, an assistant mortician, and substitute teacher.  But being self-employed is definitely the most difficult career of all.  It is easier to procrastinate, the money comes in phases of feast or famine, the unpredictability is tenacious, and I probably will never get used to standing in front of large crowds.  Furthermore, I am struggling to provide realistic, but fair, advice for the many people that contact me after reading Atypical.  When I am up past midnight trying to get everything done, the energy to write blogs seems obsolete.
It makes no difference who has it worse in the world or this economy.  Everyone has the right to complain once in a while considering success comes with a price.  I can, however, look back at the side I came from and realize the grass was not greener.  It was as dead as the winter is long.  This is a much-better reality and I realize it will be necessary to make time for everything.  With that in mind, I shall try to do a much better job of posting the blog entries on a quasi-regular basis.  I owe that to you…my loyal fans who continue to infuse me with energy…

A Catalyst for Continued Change…

Sometimes toy nun chucks and a court jester hat are not enough to keep the young crowds awake during my anti-bullying speeches.  But I do my absolute best and must sometimes accept that I won’t have control over the situation.  One time I paid a videography company eight hundred dollars to splice an hour-long presentation into a 15-minute YouTube video and I requested they edit out footage of a little girl sleeping.  My worst nightmare is when the students fail to laugh when an audience normally laughs.  Or when the constantly interrupt the flow of my talks with obnoxious questions.  When they are not responsive toward my messages to create mercy and compassion for those students who lead lives of rejection.  I leave with the understanding that abuse will continue toward individuals regardless of whether they suffer from mild autism or are just a little bit different with no diagnosis to buffer the harsh judgments.  I have absolutely no control over what happens next and there is still a good chance my younger peers will become just as miserable and bitter as I have been most of my life.  Fortunately, these apathetic schools are few and far in between.  And the faculty, students, and parents of Hamburg Middle School in the Buffalo area were anything but apathetic.  In fact, everybody blew me away.

The enthusiasm in response to my presence was merely an acceleration of the progress that has already taken place within the scholastic body.  During the first five minutes of my presentation, they had already delivered at least four heavy rounds of applause.  The humor and comedic students were not necessary to stimulate this crowd because the passion was already present.  The best part came when a little girl asked the most amazing question I have ever heard from a student during my career.  She asked, “How can we better help students who have disabilities?”

I let her know the best way to help misunderstood students is, “Don’t be afraid.  Be a friend.”  I wish this were my original statement, but it was actually purloined from my good friend, Joey DiPaolo, who was the second child after Ryan White to publicize his HIV/AIDS status.  Ask questions even though the occasional student may shirk back and say, “That is none of your damn business!  Got it??  Most students with a disability will prefer someone actually take the “radical step” to understand than choose irrational fear or malice.  Or ignoring.  Ignoring will always be the worst form of abuse because it robs an individual of social stimulation, which is the essence of life itself.  The applause was absolutely deafening and the message shall linger.

Bullying is not a rite of passage and there are plenty of other ways to build character than entering a world full of abuse and rejection.  It is also important for the world to understand that most individuals who suffer from constant bullying are not going to write books that transform them into quasi-celebrities.  I wrote my book to alleviate my suffering upon realizing how bullying does not end when an individual enters the adult world.  In some ways, it will grow progressively worse when the irrational fear also comes with the burdens of job terminations, constant misunderstandings, and even legal trouble.  Public schools terminated me from substitute teaching positions for benign infractions, such as telling a student my name is “Jesse” instead of “Mr. Saperstein.”  (The final straw came when a bank threatened to refuse service because a fellow employee was terrified of me.)  These days, however, it seems like the public is more likely to ask for an autograph than treat me as a social pariah.  I want to believe bullying is behind me, but have an obligation to eradicate it for my peers who lack the resources to end it for themselves.  I will obsessively dwell in the past to make the present a gift for others.

The family hosting me during my visit was Christine Hoff, her husband, Tom, and their four amazing children.  Tom and Tim are both students at the middle school.  The visit ended with the relentless falls of Niagara with unseasonably frigid weather.  But winter’s death-like grip will soon be conquered with long-term vitality like a seasonal Benjamin Buttons.  But the school’s change in attitude and scenery will undoubtedly remain permanent…